—–

I’ll start with who I’m not: I’m not an academic, and I’m not employed in healthcare.  I’m also not currently a partner in research or otherwise perform any roles as an engaged patient – but I do think a lot about engagement and partnership, because of a variety of lived experiences.

It all started with the intensive, extreme caregiving of my son. Owen had multiple severe disabilities all his life, and died at the age of 12 in 2010.  So I have the lived experience of a caregiver – someone who has had intensive encounters, as a parent, with Ontario’s acute healthcare system, special education, and pediatric rehabilitation.  

During Owen’s life and for a while after his death, I participated in many advisory panels, research projects and engagement activities… so although those experience aren’t current… I also have lived experience as a patient partner, in research and other health care spaces. 

I published a book about my life with Owen – it’s called No Ordinary Boy – it’s available on amazon but if you go to my website you’ll also see I’ve made the PDF of the book completely free to download.  

The book isn’t so much a classic memoir as it is a dispassionate account of the absurdities and paradoxes and contradictions that I experienced as a parent, grappling with my child’s severe disability, his deafness, also managing school, and life in continual rehab mode – which was always about measurable goals, outcomes, improvements….   

I wrote the book shortly after Owen died… and looking back I recall it as a really special time.  There were a lot of speaking engagements, connections with other parents, and I got to inhabit our former lives again, from a different vantage point.  So as an author, and a speaker – a storyteller – I was an active part of an engaged parent community, where it’s our ‘stories’ that bonded us.  There was a sense of taking what I know, what I’ve learned, and applying it to help others. Plus, there was a sense of shared identity. Not unlike other engagement and partnership experiences. I think of it as a rich community-based lived experience. 

But at some point things started to change for me…

Like many others who travel this kind of road, I felt this experience was starting to hold me in a place I no longer identified with. The continual storytelling felt like a performance, and that audiences were expecting something specific from me.  Especially in the conference context, where I was ostensibly there to educate professionals, I felt I was fulfilling a pedagogical purpose I didn’t understand. Not because it was confusing but because it was never articulated to me what exactly what I was there to teach or demonstrate…  I felt I was on display to perform emotion or tragedy or overcoming… applause at the end only added to my discomfort.

So eventually, my talks became less story and more critical reflection and analysis. I eventually decided to pursue a master’s in bioethics, which was really the start of a more organized pursuit of understanding how we think about health and healthcare.  And that includes how we think about engagement and partnership.  I’ve been hanging out in this subject matter ever since.

In the last few years I have co-authored several papers and book chapters, delivered multiple keynotes (like this one), and now co-host and co-produce a podcast called Matters of Engagement with Emily Nicholas Angl – where we really dig deep into assumptions about patient engagement and partnership.  I was granted funding by the Ontario SPOR SUPPORT Unit to get the project off the ground and we are now a going concern on our own.  To date we have produced 28 episodes and have interviewed dozens of people about their research, experiences and insights across the spectrum of engagement and partnership activities.

Which is all to say: my talk today is informed by a vast array of not only my own experiences and training –  but the experiences and ideas of many others – all the people whose work I’ve been reading and who Emily and I have been interviewing about engagement and partnership – in research certainly, and also health service delivery improvement, community health services, and health policy.   I’ll be drawing on all of this and attempting to synthesize some of what I’ve learned.

“Partners in Research: a critical exploration of roles, responsibilities and rationales”

So:  “Partners in research.”  Now to be clear it’s not any old partnering – like between clinicians and managers. Or researchers and funders. It’s partnering between professional researchers, and who we call people with lived experience.  So that includes patients, service users, friends families and caregivers, other members of the public… 

People sometimes hold dual roles, or wear different hats for different projects. But let’s keep it simple for today’s talk.  And also for the sake of clarify I will be referring to people with lived experience simply as ‘people’ or ‘partners’ depending on the context.  And forgive me if I slip and say patient partner on occasion.

I promised a talk about roles, responsibilities and rationales, and I do touch on all of those things But the real thrust for today is the ‘critical’ part.

If nothing else I say is memorable, that’s okay. What I really hope to impart is the importance and even necessity of even occasionally challenging and interrogating our deeply held assumptions and beliefs about what it is we’re doing.

—–

Many of you, I understand, are practitioners of research – meaning you are involved in the ongoing practice of conducting research, in any and all its stages and phases, in a variety of disciplines.  Researchers and partners alike are often involved in more than one project at a time, and may have different levels of involvement or commitment to different projects. So there are a lot of moving parts, a lot of interaction, a lot of interpersonal dynamics at play.  So it makes sense that we spend a lot of time and energy thinking about how to do this partnership thing well. 

Examples of things we try to nail down, include:  project roles and responsibilities, compensation, authorship, accountabilities, rules of behaviour and conduct, confidentiality – all the things that come with people working together. And it’s not simple. Reasonable people may have differing ideas about how to go about things, and so there’s some negotiation involved, as well as establishing some ground rules.

These are important details to work out.  Partly because it makes things go a whole lot more smoothly.  But also because there are potential risks and harms. 

We strive for partnership that is considered meaningful, or what we call “true” partnership,  or where we call team members equal partners… but in reality – you may touch on this later in the conference – it’s a rare project indeed that has anything resembling power sharing, or where the virtues and benefits of the partnership accrue to all team members equally. So with this power imbalance ought to come a lot of careful work to ensure that potential risks and harms are at least acknowledged, hopefully minimized.  So in addition to general terms of engagement, there is increasing time and energy spent on negotiating these ethical dimensions as well.  

Now everything I just mentioned – these are all things play out ‘on the ground’ – where the work of engagement and partnership take place. And it’s where we put most of the focus, in terms of metrics, assessment, evaluation, improvement, innovation.

All of these things together in my mind, help to form a picture of what I’ll just call ‘contemporary notions of partnership’ – which is to say that it’s organized, institution-led, has a lot of embedded ‘human resources’-type guidelines, and is increasingly becoming a de facto part of health-related academic and organizational activities.

There was a time I also thought a lot about these things.  But these days, I mostly dwell in a different place – from a more zoomed out perspective – where I contemplate these on the ground activities as scenes within much larger system, where there are all kinds of factors that shape and influence what’s happening.  I’m referring to spaces where decisions get made about funding priorities and criteria, allocation of resources, leadership and staffing appointments, and strategies related to the political currents of the day. These other things that are happening are often just out of view, sometimes way out of view – further upstream, or perhaps streams over.  

So, from this birds eye perspective, I’ve come to really appreciate that partnership isn’t a spontaneous activity or a magical activity, where researchers and partners somehow find each other in common cause.  I see the increasing institutional investment in partnership – in its contemporary form – as a phenomenon, and it hasn’t emerged out of nowhere, or in a vacuum. So I wonder about the forces that helped create it, that benefit from it, and that seek to promote and expand it.

Why is critique hard to hear?

I find that when I do this – when I launch this inquiry and use these opportunities (like this keynote) to think out loud,  I can get mixed reactions. Some people have said that what I say feels like a relief – like I’ve named a discomfort some are already aware of but haven’t named yet.  But it can also be irritating even triggering to hear someone poke holes in or challenge the very premise of partnership.

And I can think of a couple of reasons why:

1. Identity: I mentioned in my own background feeling very connected to my identity as a caregiver, as a patient partner at times, as a storyteller. I understand why sometimes people are moved to tears when describing how they feel – being heard, seen, included, their experiences and ideas valued. A sense of contributing to something important. When partnership goes well, people feel validated, connected, it can be a healing experience. When partnership goes poorly, people feel hurt, disillusioned, even angry. This doesn’t sound like a run of the mill volunteer role.  Personal investment is high, and so there’s a lot at stake.  Critique can be seen as undermining the efforts of people who mean well, for whom this is highly important.
2. Momentum: in some respects we think of partnership as maturing, coming into its own. But at the same time people note that there’s a long way to go, that progress comes in mere inches at a time……  Certainly, people are aware that there are challenges and difficulties with partnership and that it’s far from perfect – but we should keep focusing on improvement, not critique, lest we slip backwards.  We’ve also invested a significant amount of resources and good will trying to build capacity for partnership – in a sense, there’s no turning back. 

I respect these perspectives and appreciate that not everyone will be interested in looking at partnership critically or reflexively. But there’s good reason to do so, beyond just having interesting thought experiments. If we give this a little bit of room…  it may be helpful in at least explaining some of the tensions and paradoxes that do exist, which might be hindering progress.  And it also might reveal blindspots, or inaccuracies in our perspectives.

so… thinking critically or reflexively… it means being willing to look at what else could be happening – in other spaces, to other people – beyond our own personal experiences.  And taking our certainty, and making it uncertain, even for a short time.  Maybe even just… one hour and fifteen minutes

So this is an invitation to think critically – about: the role of partnership in the wider health and health care system, to what and whom we are responsible, and the rationales we use to justify what we’re doing.

—–

Each time I sit to write something about partnership I try to find a new way in, to answer the fundamental questions I still find so elusive, even after all this time…  And these include: why is partnership seen as so important, why is it so valued?  Well, this time around I now have rich source material to draw from. I don’t have to speculate by myself!  So I entered this inquiry from a different place and wondered: how did this all start?  Where did this move towards the contemporary version of partnership in research come from?

In our discussions, we heard at least 4 possible origin stories:

Possible origin stories?

1. Evolution of ‘patient-oriented’: One version, through our interview with Vasanthi Srinivasan, the executive director of the Ontario SPOR SUPPORT Unit, is that it’s an evolution of the definition of patient-oriented research. If we are to orient research to patient needs we must therefore include patients on the research team.  And in fact, Vasanthi and others at OSSU advocate for replacing the term patient-oriented with patient-partnered. (Patient-Oriented to Patient-Partnered: Aspirations, Implications, Challenges October 19, 2021)
2. Patient rights: Another origin story, which we heard from several patient partners, is that it’s because patients have pushed for their right to be involved – partnership is the result of a patient-led movement whose time has come. This is where the rallying cry of “Nothing about us without us” finds footing – it’s a phrase borrowed from the disability rights movement
3. Evolution of ‘patient-centred’: Another origin story came from a director of citizen and patient engagement, who said that it made the leap from clinical care – where notions of patient-centredness, patient autonomy, patients as partners in their own care were then expanded and applied to wider contexts.
4. Based on participatory or community-based research principles: We have also heard partnership described as springing from principles of participatory or community based research and translated to the institutional setting.

These all sound plausible – I imagine there’s truth in all of it.  Perhaps it’s a confluence of a number opf rising social and political tides.  And now that all parties- from patients to researchers to government agencies – everyone is developing programs, training, criteria, frameworks – well, I guess it hardly matters who or what started it.  Which is maybe a useful framing, because it means these origin stories are malleable, and can shift and adapt to suit different contexts.

Looking to history is one way in, to understanding why partnership is so valued.  Let’s put that aside for the moment and consider how we talk about it now – how do we explain why we’re investing so much in partnership, and what is the rationale? I know that individuals come to partnership for many different personal reasons and with many different motives and objectives – when I say rationales I’m not talking about individual reasons, I’m referring to the overall logical basis – the explanation – as to why people with lived experience belong in the research process.

Rationales?

I’ve chosen the two big ones to outline at this point.

Scientific: The scientific rationale says that patients know things that researchers don’t. Let’s leave aside the ongoing discussion about whether patients and partners are experts or not.  What is argued here is that  lived experience gives people a perspective that could be valuable, beyond just as study participants, as contributors throughout the research lifecycle. We might ask, valuable how…?  well, perhaps partners will hear or notice something that would not have been picked up on in the study itself. In a collaborative role, it’s possible for new insights and direction to be provided by people who understand the lived experience of those who are being studied. 

These are fair comments.  But I know that, taken alone, partners can find this to be a frustrating framing of their contributions.  If we use a scientific rationale only – one based on the potential for improved research outcomes –  partners are still seen as informants, even if through dialogue, even if through a collegial arrangement, it still a data gathering exercise – although done in a non-scientific way. 

The notion of partnership can get lost in the scientific framing. Who decides which points are relevant? Who decides which partners are involved?  At what point are partners invited to bring ideas and comments?  Who decides these things?  It’s not commonly a vote – usually the PI decides.  

Democratic: Another rationale is that it’s democratic, based on a variety of rights.  There is a real weight to this claim – a gravitas that has the ring of fulfilling a public duty almost. 

Includes elections, participation in society

In Canada we certainly have democratic rights and they’re expressed in our right to stand for office, vote and elect representatives. We also have rights to participate in civil society through any number of activities, like volunteering, and to participate in decisions that affect public welfare. 

These are two common conceptions of what we mean by democratic rights.

For the most part, partnering in research is not a democratic activity in the electoral sense. Institutions or researchers invite people – sometimes specific people – to collaborate on projects.  They are not opening elections or providing means for the public to select who is going to represent them in the research project.  However it is certainly accurate to say that people have a right to volunteer and be involved in matters that concern them. But when it comes to conceptions of meaningful partnership, we can run into trouble here too.

Boothe K. (Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time. Health Econ Policy Law. 2021 Oct;16(4):424-439.

Katie Boothe, a political scientist at McMaster, authored a study called “(Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time,” in which she considers how experts think through public and patient involvement in technical policy processes, and she hones in on the tension between scientific and democratic legitimacy.  The citation is on the screen and there will be a link in the transcript.

In conversation about her work, Katie noted that when parties come together with differing notions of legitimacy it can be a setup for a real mismatch of expectations and goals, and one of the ways that people who are sincere and of good intent may end up talking past each other. 

I think this applies in the case of partnership in research, where it’s not enough for partners to be seen as mere data points, but it’s also not enough for partners to simply be present.

And yet, although insufficient, these scientific and democratic rationales are held up as core justifications for carrying on.

And I think this may go a long way towards explaining why there can be feelings of tokenism or box checking even as everyone is following an agreed plan.  Or why researchers may, indeed, value the contributions of partners, but the partners themselves feel out of the loop and insufficiently involved.

—–

These are not small issues. There can be a not-so-quiet discontent when people indeed, as Katie says, talk past each other.

And it’s not clear to me that these fundamental issues can be addressed in the scenes and locations where partnership is taking place. Rather, I think these issues originate much further upstream. 

There are limitless articles and websites and conferences about the ideals of partnership – as well as the how-tos, but I think there’s an absence of a well-articulated vision of what partnership is supposed to accomplish, and what it should actually look like, beyond establishing nice relationships.

There seems to be both a strategy and communications vacuum, which has led to a proliferation of wildly different ways that partnership is understood and implemented.

Granted, as I mentioned there have been lots of efforts to stand up some kind of scaffolding to support the ideals that have only been very loosely articulated – these come in the form of tools and frameworks, guides and articles (many of which were written by patient partners), university-based training (to better integrate partners into the research process), as well as ideas around evaluation – there’s a whole industry being built up around creating support for partnership and it’s a bit of a juggernaut – an unstoppable force.

Honestly, I do sometimes wonder if I’m just pulling at threads that don’t warrant pulling. In fact some would argue that things are exactly how they should be – that there’s a democratic impetus to involve people, and now let’s work together to make it meaningful and impactful and even scientifically defensible.  

It’s not an unreasonable view.  But I pull on the threads nevertheless, because I think there are huge blind spots that relate to ideas of representation, and including a diversity of voices.  Some of us wisely ask: who is at the table and who is left out? But for me, increasingly more pressing questions include: who made the table, and who says that’s where decisions should be made.

—–

Emily (my co-producer) and I had a lot of conversations in the past year with people who expressed a need for diversity, better accessibility and wider demographic representation in partnership and engagement activities.  The language varied, depending on the context: We talked about EDI – equity diversity and inclusion. We heard a lot about “reaching the hard to reach.” Words like disadvantaged or marginalized come up a lot.  And more broadly, we heard about leveling the playing field, and working towards correcting power imbalances. 

These can feel like complex concepts reduced to buzzwords – but to be fair they often came from an earnest place to try and make partnership more collaborative, more fair and more inclusive. 

Leveling the playing field?

Let’s unpack this a bit:

Partnership should be more diverse
One common theme is making partnership more diverse, so that there are more varied perspectives informing research and research projects.  This might connect with a scientific rationale, based on assumptions that a wider variety of perspectives will improve the work – and it’s this goal for more diversity that leads to fairly intensive strategies around recruitment. 

I encourage you to take a look at the work of Paula Rowland, one of our very few repeat guests. She takes a critical look at recruitment in engagement practice – I’ll put a couple of links in the transcript to her episodes. Dilemmas of Representation, with Paula Rowland June 29, 2020; Webinar Extra: Paula Rowland presents Dilemmas of Representation for BPER November 2, 2021

Partnership should be more accessible
Another way we try to level the playing field is to make partnership more accessible, so that anyone who wants to participate, can.  It’s a kind of open door policy. This might connect with the democratic rationale related to civic rights – people have the right to volunteer and participate in matters related to public impact – and this goal leads to improving outreach and developing non-discriminatory practices.

Partnership itself makes research more relevant to end users
And finally there’s the idea that partnership itself is a corrective – that there’s something transformational and even radical about people being invited into a space previously reserved only for experts – those experts being researchers and academics who are seen to be lacking perspective on how ‘real’ people actually live and experience illness and health.  By integrating partners across the research lifecycle, the thought is that we’re ensuring that research is more relevant to the needs of the people we’re studying – the implication being:  more improvement in health equity and health outcomes, and improved access to healthcare. And this is consistent with a turn we’ve taken in recent decades – we meaning Canadian health policy – towards a focus on translational medicine, implementation science, public uptake of research.  It’s connected to our reframing of patients or service users as customers. Research and academic activities increasingly need to be justified as being useful and translatable to something of value to end users – whether conceptualized as patients, health care providers, students, taxpayers, the public.

These are really deeply held beliefs about the potential role of partnership in a wider societal project to make health and healthcare more equitable and accessible.  But in keeping with the critical perspective – any seemingly irrefutable moral argument, I think, deserves a good hard second look.

Some critical ideas:

So I’d like to share some of the critical ideas discussed in our interviews, and introduce a little of that uncertainty I spoke about earlier.

Diversity ≠ equity
Nav Persaud is the Canada Research Chair in Health Justice and a physician at St. Mike’s in Toronto. Our conversation with him reoriented how we think about diversity. Diversity in and of itself is often window-dressing and can be quite far removed from actions that support equity or removing discriminatory practices. Through many examples Nav convincingly explained that diversity does not automatically equal equity, and in fact ‘diversity programs’ often deflect from inaction and continuing harms. As Nav said:  “Who benefits from talking about diversity? It’s often not people who are affected by discrimination.”  (Equity, Diversity, and Patient Engagement – with Dr. Nav Persaud November 16, 2021)

Engagement requests can drain energy from communities
We also spoke with people who identify as members of a community and recognize that contemporary engagement and partnership do not serve their needs, and in fact may cost them something.

• • Lucy Costa of the Empowerment Council at CAMH described how the integration of people with lived experience into organizational roles can erode the work of advocacy. (Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy – with Lucy Costa July 6, 2020)
  • Alpha Abebe and Rhonda C. George – researchers studying Black community engagement –  noted that Black communities already know what they need and find little value in participating in organized partnership efforts – particularly in spaces where Black community needs are not prioritized.  And yet, when invited, Black community leaders feel they can’t say no.  (Health Policy Series: Black Communities, Medical Mistrust and COVID Response, with Alpha Abebe and Rhonda C. George June 16, 2022; Health Policy Series: “Flipping the script” on narratives about Black communities and engagement, with Alpha Abebe and Rhonda C. George June 7, 2022)
  • Jenn Broad and Paula Tookey, who work in supervised consumption and harm reduction, shared the importance of community members electing their own leaders to represent them in matters of interest.  Plucking people out of community to participate in diverse settings can be ineffective for addressing community needs, and worse, could be harmful and stigmatizing for the individuals. (Engagement in Context: Reflections from Jenn Broad and Paula Tookey of the South Riverdale Community Health Centre December 20, 2021)

These are just a few examples of how contemporary institution-led engagement and partnership activities can drain energy from communities and may work counter to ideals about improving equity in health and healthcare.

Participatory and community research don’t translate well to institutional contexts
Lori C. Ross is a researcher at the Dalla Lana School of Public Health – we learned from her work that principles of community-based or participatory research don’t easily translate to institutional settings, as projects are heavily constrained by bureaucracy and power hierarchies. It’s maybe easier to maintain the principles in spirit rather than in actuality.  (Discussing Failures in Participatory Research, with Lori Ross December 13, 2021)

Vagueness of language can help to maintain the status quo
Amy Katz and Melody Morton Ninomiya, researchers who wrote about use of the word “vulnerable” in public health research – call attention to vagueness of language, and how it serves those in power to stay in power. They also discussed how vagueness of language leads to vagueness of action – which all serves to remove accountability. (Vagueness of language, unarticulated assumptions, and maintaining the status quo. With Amy Katz and Melody Morton Ninomiya November 22, 2020)

In our discussions about equity, diversity and other related concepts – we heard a lot of good intentions, but a lack of specificity, lack of strategy, lack of commitment to change.

Partnership and engagement are rife with paradoxes and constraints –  and many acknowledge that the work is not easy.  But there is always an underlying assumption that it’s ultimately good, and the right thing to do. These critical ideas are direct challenges to that.

And they’re not just “ideas” – these are people, telling us that contemporary notions of partnership and engagement cause harm, don’t represent community interests, continue to reinforce the status quo.

We spoke earlier of scientific or democratic rationales –

so we now possibly have a 3^rd one –

which is “moral and ethical”.  I think it’s possibly the most problematic one, as a critical look reveals potential harms that we cannot see when we bring our attention only to the ‘on the ground’ activities. 

—–

Some of the critical ideas I brought forward can be hard to reconcile.  Even though indeed, many people enjoy partnering in research and find that the research project itself may be improved – it may also be a way for those who benefit from the status quo to keep things the way they are. ….and despite efforts at diversifying partnership and engagement activities, communities who have historically been excluded from receiving equitable health care, remain on the outside, not benefiting from these contemporary partnership approaches. 

I say this is hard to reconcile because what I just described? It typically doesn’t jive with the experience of those who are actively engaged.  The ideals that infuse partnership with its sense of virtue – they seem obvious, important, maybe even an expression of what it means to be Canadian.

Partnership

Partnership embodies a number of ideals like:

• Expression of democracy: a commitment to democracy, right to participate, individual rights
• Patients and the public as consumers or customers: a redefining of patients and the public as consumers or customers
• Multiculturalism: support for multiculturalism and diversity and new ideas….
• Innovation, relevance: particularly in support of improvement and innovation and relevance

Classical liberalism

What I’m describing here is consistent with “classical liberalism” –

which among other things, assumes that everyone is starting from the same place and everyone deserves an equal opportunity – and which is silent about things like the ongoing legacy of historical oppression, or the fact that some groups disproportionately experience disadvantage.  Some hold liberalism responsible for the growing health disparities and inequities we see today, as well as our collective unwillingness to actually address it.

I’m not a political scientist and so I’m going to step back from this particular ledge…!  I realize this is not a perfect comparison…

But drawing a connection between the ideologies of partnership and liberalism may help explain why the benefits of partnership are not felt by everyone, and why for some, institution-led efforts at engagement and partnership may feel like… just another mechanism of exclusion from a health system that wasn’t built to include them in the first place.

—–

Okay, so… we’re nearing the end, and you might be wondering… well, now what?!  I know it’s Research Day and I’ve taken you through quite a meandering journey – maybe one you didn’t expect – and I want to thank you for bearing with me. Let me see if I can reign this back in.

The point of this session was to critically explore partnership in a way that makes it uncertain and unfamiliar, in order to paradoxically… see it more clearly. This doesn’t mean we drop our tools and go home. It means we should confront those paradoxes, proceed in the knowledge that even if we feel certain things are beyond our control, we can perhaps minimize harm in the spaces we occupy.

As you move through today’s sessions – whether you’re discussing dynamics of power, research with indigenous communities, or integrated knowledge translation – well, you may wish to park these ideas for now, shift gears, focus on the topics at hand,.  Which is not to discount the importance of doing so. Critically-minded researchers of engagement like Paula Rowland and Julia Abelson… their work suggests that if we’re going to undertake this project of partnership, we owe it to all involved, to do it respectfully, to minimize harm, to contribute to the work with integrity.   

But I invite you to consider keeping another channel open. Allow a critical curiosity to seep in, where you can become aware of ambiguities and discontinuities, notice what stories are being told and for what reason.  Claims of equity and fairness? You could listen with a different ear, see if they ring true.   Perhaps trace where the power and the money flow.

I realize it can be a tall order, to carry around a critical lens when you just need to get stuff done. But maybe think of that lens as part of a reality-check toolkit you can pull out on occasion – one that includes doubt, curiosity and self-awareness – because critical reflection is also about examining our own motivations, and the stories we tell – to ourselves and others. 

I realize I’m not leaving you with terribly practical recommendations for improvement. But I have no doubt that it’s only by critically engaging – by honestly reckoning with all of the possible realities, not just your own…  that new pathways can open and real change can happen.

Download transcript (with timecode) here

Hi, thanks so much for tuning into this presentation. It’s been a little while since I’ve prepared a talk like this. And I’m always glad to have an opportunity to share some critical ideas about patient partnership in research, especially to a new audience.

A quick note before I start: I’ll be making a transcript of this recorded talk and providing it to the organizers of this conference. But if you’re watching this video and don’t see a transcript – and would like one – please email me at jen dot johannesen at gmail dot com and I’ll send it to you. I’ll also be posting this on my blog at johannesen dot ca.

I’ve written and spoken quite a bit about the topic at hand, focusing primarily on some of the rationales and implications of bringing patients (or end users) into the health research process. My work doesn’t delve into improvement per se. I don’t have a lot to talk about when it comes to how to make things better or more meaningful, or more impactful, or whatever the measure of success may be for a given project. I’m more interested in questions that traditionally spring from the social sciences, like why and why now, who benefits? What are the harms? And what is the cost?

To help give some context to this discussion, I’ll first share a couple of things about myself. First, I’m Canadian. And this matters for this discussion because our healthcare system has a strong culture of patient engagement and participation. My work stems from close examination of the evolution of engagement in a place where it’s reached some maturity as a practice. And second, I speak from both personal experience and academic study. I’ve been an engaged patient for decades, starting from my first pregnancy about 25 years ago. I then went on to study bioethics and have embarked on a decade long quest now to push against establishment ideas in healthcare. I like to think of myself as an outsider. But here I am doing things that firmly locate me on the inside! I can’t reconcile this, so I’ll just leave that to remain a contradiction.

Canadian context

So, Canada… I’ve lived all of my life in and around Toronto. All of my healthcare and health research experiences have been here, and have been experienced through the lens of a middle class and non-Indigenous upbringing. Non-Canadians tend to think of us as having a single national health care system like the NHS in England, but that’s not quite right. Each province or territory has its own health authority and health insurance plan. So care and coverage differ from region to region.

In the case of health research, we have a national funding body called the Canadian Institutes of Health Research or C-I-H-R, and they have a national Strategy for Patient-Oriented Research known as SPOR,  S-P-O-R. Now, the definition of patient ‘oriented’ research has evolved over time to essentially become synonymous with patient ‘partnered’ research. Which means the goal is for patients to be involved in research at all levels. Not just as participants, but as advisors and planners, co-investigators, co-authors, maybe involved in ethics review. And all the way from framing research questions to implementation, evaluation and knowledge translation. CIHR-funded health research projects require that applicants state how patients are planned to be involved. And this carries significant weight and funding decisions.

Now, beyond involvement in just health research, we also have a culture of “patient engagement”, where patients are involved at all levels of healthcare service design and delivery. This includes patient advisory committees, patient project groups, patients as trainers in medical education, and patients on hiring committees. Whether required by funders or simply part of cultural expectations, the ethos of engagement is deeply embedded throughout every aspect of healthcare. My critique of patient engagement and partnership arises from this context, where there’s not only a push from patients to be part of decision making, but a mandate from governments to include patients in health research.

While many researchers have come to accept and even embrace the shift, it’s worth noting that the impetus for mandating the inclusion of patients across the board did not seem to come from the research community. The demand for a mandate to include patients comes from funders, administrators, policymakers, and of course from a subset of patients who are interested in engagement.  It’s for this reason that I think of it as a social or cultural phenomenon.

Personal experience

Now allow me another minute or two to share my personal experience which led me to all of this. My first engagement experience was very early on in my own intensive health care journey. I had a son Owen – his picture is right behind me – who was born with multiple severe disabilities and health conditions. Owen died about 10 years ago, when he was 12. Now, his issues started very early. He’d had procedures in utero and then was born at 28 weeks. I’d had a frankly terrible interpersonal experience during the diagnostic ultrasound. And when Owen was still in intensive care, one of the doctors asked if I would be willing to share my story at an upcoming sonographers’ conference. Now, this was mere days after Owen was born. I was still in shock and traumatized. But I actually didn’t care. In fact, this felt like a gift – a way to make sense of what had happened and to talk openly about my experience and to maybe impact others. And I was just so flattered! I prepared that talk for weeks. I spoke nervously to a roomful of specialists and researchers, and was met with much applause and teary eyes. And I was hooked.

I took every invitation after that, that I was offered – speaking to medical students, and writing articles, delivering lectures, sitting on advisory committees. And I helped design a patient survey for a study on which I was listed as a co-author. Now at the time, it was all volunteer, and it also became a significant part of my identity. I didn’t use this term at the time, but I have friends in similar situations now who call themselves “medical moms” or “medical parents”. And that usually entails a deep dive into the medical and technical ins and outs of our children’s conditions. And I think to a large extent also includes volunteer work and advocacy, peer support and health system improvement, and sometimes contributing to health research.

Engagement and personal experience are deeply intertwined

In this respect, being a patient engaged in your own care, and being a patient engaged with the healthcare system, become quite enmeshed. And because of our culture of engagement, engaged patients in Canada are often involved in many different kinds of projects across the healthcare spectrum. Now, some may have preferences or particular training, but most engaged patients I know participate in both organizational improvement and health research. And in fact, often, organizations with research activities or affiliations share the same resource pool of engaged patients.

Now over the years, my son’s needs and concerns became ever more complex and requiring specialized attention. And at the same time, like my fellow medical moms, my activities as an engaged patient continue to increase. But at some point, on both trajectories, my energies really started to wane. I grew more skeptical and more fatigued. The change or improvement that was promised on both sides was never realized.

On the clinical side, our physicians were certainly expert and caring, and always gave me room to make decisions. But over time, I started to see that medical care is not delivered in a vacuum. It was not purely about science or medicine. There was a perspective with lots of assumptions about disability and deafness, neurodevelopment, how to measure improvement and success, ideas about inclusion and special education. I also noted that there were plenty of assumptions about how much work I was expected to perform as my son’s therapist and personal support worker and parent. And all of it was based on assumptions that were never articulated explicitly. And frankly, maybe not even known to any of us – it was just in the air that we breathe.

I think generally, we understand that healthcare service delivery is both an art and a science. And I would also say it’s economics and politics and culture. And we kind of know this, I think, right? We see these other aspects come into much sharper focus in times of stress, like in a pandemic, when we must ration care, triage emergencies, rank how much we value cognitive abilities and physical function. As individuals, we also see this when we experience a long-term chronic illness or disability. The economic, political and cultural assumptions that we’re all immersed in really start to reveal themselves. So yes, we received excellent medical care. But as I grew tired of performing as a medical mom, and as my son failed to achieve any of these heroic physical feats we set before him, I really felt the weight of these unreflected assumptions.

And then on the other side, there was engagement. Which for medical moms like me, was a concurrent and intertwined experience that was inseparable from my intense healthcare experience. I felt that regardless of how personally rewarding it occasionally felt, my inclusion was always tokenistic. Or maybe symbolic is a better word. My presence served a purpose well beyond my actual contribution. Which is not to say that I didn’t have occasional impact! But that would have been incidental. Maybe a happy accident. The point was simply to have a patient involved regardless of what they were able to contribute. The value of my presence was simply assumed. Now, there was more to it too, which I’ve addressed in other talks, but I’ll just mention here: engagement gave me a safe space in which to channel my discontents and my advocacy energy; I was gently coached and guided into being helpful and productive; and occasionally pressed into service for free communications or administrative work.

Examining assumptions

So why have I spent all this time describing all of this? Because I think in places where involving end users in research design is not yet common practice – where engagement and partnership does not yet have widespread adoption – the idea of feels novel.  And rings true. It seems obvious that it’s the right direction to go. And it’s also such a fast-moving train, it would be near impossible to stop. But I suggest that it’s never too late, or too early, to consider what else might be at play and to challenge some of the assumptions that go by unexamined.

Through all of my reckonings, I have not lost faith in the healthcare system. Quite the contrary. Rather, I would say have broadened or shifted my understanding about what I think is happening. Yes, there is research and science and medicine and evidence and treatment. But there are also human beings involved.  Which means politics and agendas, power and control, management over bodies and ideas. Which, of course, is the case everywhere. In all of our institutions.  Maybe [this] even is the point of institutions. The bottom line here is that it is not just science driving healthcare and health research. The very fact that, in this conference, we’re delineating “evidence-based research” from, I guess, other kinds of research…I assume this means you probably understand this. But we rarely consider what these other levers are – the ones that get pulled to direct improve or otherwise impact society. In some cases, levers get pulled to make service delivery more manageable and predictable, efficient and safe. And these levers are things like policy nudges or ethics review or triage procedures. In other cases, levers are pulled to settle people down.  To calm unrest, to foster contentment and to manufacture satisfaction.  To deliver a good experience. And these levers include patient experience programs, patient centered care practices, patient feedback mechanisms, and quality improvement programs. We use the language of business which gives it a bit more “oomph”. We treat patients like customers. Try to innovate and continually improve.

Now, when it comes to healthcare and health research, these levers are not deployed to support or nurture science, but rather to appeal to a demand for progress, competitiveness, efficiency, and also reputation, legitimacy and influence. And this is where I think patient partnership finds itself.  Not as a way to improve research, but a way to address something else.

I call it a phenomenon because it’s obviously happening and we can’t always say exactly why. I call it an ideology because it’s a belief system that comes with its own circular justification. It’s also really modern in the way it can be flexible and malleable. It appeals to our sense of patient rights and advocacy and even activism. There’s a sense of identity politics. Ideas of populism, where out of touch experts need to hear from “real patients”, and where we tussle over contested ideas of expertise and power, and the ways in which democratic societies express or govern themselves.

Involving end users in health research. It’s such a simple and obvious idea! Yet embedded is a lot of complexity, if one chooses to look. I do try to chip away at some of these ideas, but I just can’t hold it all in view, especially all at once. And there are many waves that swell and crash and then dissipate – it’s hard to hold on to. And as I talked about earlier, it’s very hard to separate a person’s experience as a patient – which may have been life changing and extraordinary – from their desire to try and help improve health research or healthcare service delivery. Casting doubt on the entire engagement enterprise? It’s a tricky business.

Involving patients in research: it’s not about the science

Now, in all of my inquiries into this phenomenon of patient engagement, especially here in Canada, I’ve had a lot of thoughts and theories. But there’s really only one thing I feel certain about. It’s that it’s not about the science. There was no evidence to suggest we should include patients in the way that we’re doing it, before its popularity surge of the last 10 to 20 years. The idea came first. And now we’re trying to catch up to explain why we might want to call it a good thing. And on that point, there is indeed a growing body of research about engagement and partnership. It tends to center on matters of implementation and quality. Meaning: was it done well? Did patients and researchers enjoy themselves [and] appreciate the experience? Did they feel they learned something from each other and was it fulfilling? Did the patient partner feel valued and heard? And did the researcher communicate well, and invite everyone’s perspective? And maybe the question that’s most relevant is: did the engaged patients change the course of the research or act as a catalyst in some way? Was it “meaningful”, the holy grail of engagement? Now, as I said, casting doubt on the engagement enterprise is tricky. Even I hear how cynical it sounds, when I suggest that meaningfulness is unimportant, or that claims of impact seem arbitrary.

The truth is that I’m actually aligned with some of the goals of patient engagement. Health care and health research should address the concerns and interests of those who are most affected. If I were in charge, I would certainly choose relevance over irrelevance. If there are ways to steer research closer to meeting patient needs and solving their problems, or to being communicated better or to be more readily taken up by patients and the public… I’ll go on the record as saying “I’m on board”.

But here’s the thing: we already have established research methods and process to do these things, some of which I know the EBR community advocates for.  Including comprehensive literature review, qualitative or mixed methods research, community-based research approaches, and various priority setting and outcome measures exercises. We know that we can gain a rich understanding of patient needs and interests through existing research methods. So, let’s consider what else is gained by adding partnership into the mix.

Why “partnership” ?

The first thing that comes to mind is that partnership provides an opportunity for a potentially satisfying participatory experience for the individuals involved. And often meaningfulness is measured by looking at things like interpersonal or group dynamics – not at, say, whether partnership impacted society, or whether the assembled group in any way represented the interests of a broader spectrum of patients, or whether non-engaged patients endorsed the contributions of engaged patients.

Another reason we might add partnership, instead of just doing research, is that saying “patients were involved” is a bit of a shorthand. It’s a way to signal to the outside that a particular study or project thinks of itself as being patient-oriented. It suggests a spirit of collaboration and says something about intent – but nothing about quality of implementation or practice.

And finally, partnership provides ready access to patient perspective more quickly and easily then doing research. The risk here is that this proximity to patient thoughts and ideas – and also the loose way we use the word “partner”, which brings with it notions of equity and equality – well, it just might feel sufficient. The need for literature review or a survey or a focus group or some other research method that would validate an idea? Well, it may just feel less urgent if you have real patients in front of you, giving you answers.

What institutions and researchers learn (or take) from patients

Now, let’s take a moment to acknowledge that there is real value in talking to patients and that much can be learned. Thinking about this point, I’m reminded of a paper titled, “Learning from patients: constructions of knowledge and legitimacy in hospital-based quality improvement programs“. The first author is Paula Rowland. Now this paper isn’t specifically about involvement in health research, but I think it presents some useful ideas.

In this qualitative study, the authors argue that organizations don’t learn directly from patients per se, but are learning from what they call “constructions of patient subjectivities”, which could be a way to describe what animates a patient’s legitimacy as an advisor from the perspective of the organization. In the paper, they identify three constructions:

The first is “process informant”, where the patient displays legitimacy by providing details and insights about organizational process or practice. And then there’s “vessel of meaning”, where the patient relays a (usually) carefully crafted story of their experience as a patient in an emotive way, generating an affective or emotional response. And finally, there’s a “critical friend” – I think of this construction as a kind of dialogue partner or trusted confidante, who may shed light, discuss challenges and help to sharpen the focus of a project.

These are not necessarily roles or types of people. These are frames through which to view how patient knowledge and experience gets organized and presented as legitimate in an organizational advisory context. Now, these kinds of analytic frames, I think, are useful, because they can take us past assumptions about what is happening. We know engagement isn’t science. But it also isn’t magic. If we demystify what’s happening, if we stop romanticizing it, we can perhaps move our attention from the seemingly magical powers of patient knowledge and experience (which you’d think by some accounts get conjured just by assembling patients in a room), to the extractive nature of what organizations are asking of patients. We can use the word partner all we want, but rarely is there a partnership or equity in terms of decision-making, influence, power and compensation. It’s much more likely that patient partners are playing a supportive role, subordinate to the research and institution. And that they have been enrolled to satisfy agendas that are both seen and unseen.

So if you’re doing evidence-based research, where does patient partnership fit in? It exists on an entirely different plane from the research itself. To ask if it’s evidence-based is to miss the point of why some think it should be a new standard for research. And to me, it’s a contradiction and not reconcilable. And yet, the phenomenon continues to take hold and shift and grow.

You may have heard accounts from both researchers and patient partners about how partnership experiences can be impactful and transformative, individually and for the project. So even when it’s hard to specify impact, I actually believe it. Why not? When interested and engaged people come together over a common purpose, creative and productive things can happen. So it’s reasonable to ask: why not surround yourself with dialogue partners, or invite someone to illustrate patient impact with a real life story, or seek advice from someone who can shed light on something you don’t know? Sure. I can see why it’s argued that mandates and frameworks and contracts are what allow these moments of learning and connection to happen more frequently. So, let’s go on the assumption that hearing from or consulting with individual patients is a reasonable part of a researcher’s process.

Validate patient input with research

But let’s keep in mind two things. First, I think these consultative practices should only be taken up with the knowledge that they do not replace evidence-based methods for grounding work in a scientifically rigorous process. Whatever ideas come from these encounters should be validated in the literature or through further research. And much like any sort of data collection method, there should be an analytic process through which patient input is understood, and contextualized – which I suppose makes it start to look more like research! In other words, patient partnership should not be considered sufficient for understanding or addressing patient needs and interests.

Patient partnership is not patient-centric

And my second thought is that, while these may ultimately be useful practices from an organizational or institutional perspective, there is very little about patient partnership that is, in fact, patient-centric. Patients are invited to participate at the behest and the timing of institutions and researchers under terms and conditions not of their own making. Viewed in a certain light, we could see that programmatic inclusion of end users in the research process provides: a rich source of free labour; easy access to opinions; and a way to signal virtuous intent.

Patient engagement practices have been around in Canada for a little while now. And patients are sensing the hollowness of some of these initiatives. There are increasingly loud patient voices calling for fair and respectful treatment, remuneration for their work, and to be provided with training and skills to feel they can actually contribute in a way that is productive. The burden seems to have fallen to patients to push for improvement and to not be seen as symbolic. That seems upside down. What if it was flipped? What would a patient-centric endeavor look like? I think it would mean discontinuing the mining and extracting of value from patients based solely on lived experience. We have research to do that. Instead, we could understand the patient collective as a stakeholder group, who have a shared and vested interest in seeing research funded and conducted with transparency, equity, distributive justice, with a focus on community priorities and impact. Personal fulfillment would take a backseat, with involvement centering on priorities and interests determined by a patient collective.

I’ve said for years now that engaged patients should have agendas. They should be politicized. They should make things uncomfortable.  And some do, but they usually can’t keep it up for very long. Patient engagement and partnership programs rather successfully absorb or deflate those energies, training and socializing patients to be cooperative, collaborative, and non-confrontational. And this approach is far less messy – and it’s kind of the Canadian way. But it also serves to keep the patient voice in check. It’s one of those non-science levers that gets pulled in aid of other interests.

Conclusion

We’re at the end, so I’ll try to summarize into something salient! The programmatic involvement of end users in health research is not and never was about the science, nor is it based on evidence. Project to project there will certainly be occasion where involving end users would be appropriate and helpful. But if we look at it through an EBR lens, we’ll come up short. It’s perhaps more instructive if we think of it as a social and cultural phenomenon, even an intervention, that is not neutral or organic or grassroots.  Or magic. As partnership and research becomes more and more prevalent, don’t be afraid to ask unpopular or difficult questions. Maybe even just starting with: why?

I’ve been in the process of sorting out my weight and health for about 2 years now. Most readers know the story: I lost 45+ pounds and I’m not even pre-diabetic now, nevermind having been diagnosed with type-2 diabetes. And I recently discovered another good side effect: previously chronically high thyroid readings are now normal. So, lots of changes. I trucked along happily while I was losing weight and improving my diet, but I hadn’t thought much about what would happen when I reached my goal weight. When it happened, I had a crisis of “now what?” Couldn’t return to old habits… but I didn’t want to keep losing weight. So I slowly started adding calories until I stopped losing, and landed at a place where I *thought* I understood what I needed to eat to maintain my weight. Makes sense, right? And conventional wisdom says: if I eat more, I’ll gain weight. If I eat less, I’ll lose weight. So until recently I’d been rigorously adhering to a golden number.

In a surprising turn of events, I’m learning that bodies are far more complex than that.

I’m writing this for all you folks out there eating at a caloric rate that feels ungenerous or that’s compromising your energy. Where you’ve ratcheted down your food so much there’s nowhere to go, even if you still want to lose a few pounds and can’t afford to eat less. You can read more about what I’m about to say if you look up ‘reverse dieting.’ I didn’t investigate this as I was losing weight and I really wish I had. Not too late though.

I was over 175 pounds and eating around 2400 calories a day. In order to lose 2 pounds a week, I had to eat around 1000 calories a day less. Simple math. I did this for several months. When I hit my goal of 130 pounds, I started adding calories back and also started to shift my exercising from a lot of cardio to more focused resistance training. I settled in at around 1800 calories a day for maintenance and assumed this was my forever calorie amount unless I wanted to exercise more. I looked back at 2400 calories and thought, well no wonder I was overweight!

But as it turns out… while calorie in/calorie out is the right principle, it’s also possible to find equilibrium at different levels of intake. I’ve slowly been increasing calories again and haven’t gained any weight. I’m now eating 2350 a day – almost the same amount as when I thought I was overeating at 175 pounds. And I’m still 130 pounds.

There are a few factors causing this, having to do with body composition and metabolic rate. I burn more calories now just walking around than I did before, because I’m carrying more muscle and sending frequent muscle-building signals through more consistent training. But this is a relatively new state for me. I did a LOT of cardio while I was losing weight. More cardio means more efficiency and energy conservation – your body requires less fuel because you’re sending signals that it needs to be efficient. Anything beyond that gets stored as body fat. So if you want to eat more, cardio does not support this. This is why, in order to keep losing weight despite all the cardio exercise, people have to keep reducing calories until it’s untenable. Building muscle, on the other hand, is considered an ‘expensive’ activity. Carrying muscle is inefficient use of energy. You have to eat more to build and maintain it.

Also – and this is the crucial point – at 1800 calories, I was still under-powered. Yes, I was burning all the calories I was eating and therefore maintaining my weight – but this created a false assumption it was the ‘correct’ amount. I was slowly eating more until I stopped losing weight, and I assumed that that meant it was the right place to stop increasing calories.

That’s certainly one way to do it – but it seems I stopped increasing when I found the bottom end of a range. I’m now trying to find the upper end – see how much I can eat and still maintain my weight. 

All of this to say: if you’re a dieter (which is shorthand for a lot of things, but maybe you identify) and have been eating at a certain low calorie range for a long time – well, it may be unnecessarily low. You may have artificially created a balance that seems like your ‘true’ maintenance – but it’s possible you could also maintain at a higher calorie level – and probably feel better overall. Since eating more: workouts are better, sleep is deeper and longer, libido is increased, I no longer get dizzy when I stand up too fast, I’m not chilly all the time, mood is steadier.  And something to consider: if you get most of your exercise through cardio, you might research how this is affecting both your metabolism and cortisol production (stress response), both of which will impact a lot of things including how you lose or maintain weight.

Not medical advice. Just, you know… think it over.

If you’re curious: for food coaching, I’ve been using this app and it’s done wonders for helping me slowly increase calories without freaking me out. For exercise, I’m currently following this program. And I also walk an average of 8k steps a day, which I track with a FitBit.

Today is Owen’s birthday – he would have been 22. If he’d survived COVID-19. I see how fraught these times are for families with school-aged children. Double – no, triple – that for families with kids with respiratory conditions or compromised immune systems. A million times that for families with kids (or parents) living in residential facilities or long term care. I feel worlds away from the trauma of living that reality, which is a relief. And not without complicated feelings.

—–

We moved out of Toronto last year to a much smaller town (Guelph) about an hour and a half away, very close to the town where I grew up (Kitchener-Waterloo). It’s the perfect place to wait out a pandemic and live out my latent fantasies of gardening and walking to the river early in the morning and building a home gym in the garage. And I get to do it all with my favourite person.

—–

My dad died in January. He was 80. I knew his death was coming and I just couldn’t think about it, which is probably just as well. I also can’t talk about it still, which I suppose is also fine. But because it’s relevant to this blog I will say this – it’s because of him that I’m the writer I am. As a historian, an editor, a writer himself, he showed me that everything we write, no matter how ‘true’, is invented. Or constructed. Made up. We’re revisionists, trying to make an impression. Sounds cynical but it’s not – it’s freed me up in ways I can’t even express.

We were supposed to have a family gathering in March – a party of sorts, at one of his favourite restaurants. The Danish Place, where he and Penny got married and where we often met for brunch. My brothers live in England, California and Poland – by the time we were supposed to get together the pandemic was in full swing and travel wasn’t possible. It feels like unfinished business, but I think Dad would have been okay with that.

—–

I started a podcast. Matters of Engagement. It’s an all-encompassing project and I’m so glad to be working with Emily on it. We’re making something great but more important, I’m very much enjoying what has become a rather unconventional, often hilarious, and highly productive collaboration.

—–

I lost a bunch of weight last year – about 50 pounds – and no longer have type-2 diabetes (in case you’re about to ask, the answer is: diet and exercise).

And this year I’ve been focused on various aspects of fitness and function. I lift weights 5-6 days a week. I’m always in some phase of a workout program. I still track all my food and switched recently to a more sophisticated macro coaching app. We joke at home about my ‘side projects’: I did an 8-week “6-pack abs” program on top of my regular workouts; I bought a power tower so I could work on my pull-ups; I walk about 5km every morning. I think about nutrition, exercise and body recomposition a lot. I want to look and feel a certain way and that takes work.

And it all seems weirdly out of sync with modern ad and social media campaigns to embrace yourself as you are. Self-improvement is great but only if it looks a certain way I guess.

—–

What else…? I’m watching Angus grow into a fine young man, figuring things out on his own terms. No age is easy but 20 has unique challenges – plus all the inherited crap this young generation has to contend with. Oh right, plus the pandemic. Readers of No Ordinary Boy often ask about Angus. His story isn’t mine to tell. But I think he’s great, and I think he’ll be fine.

I’ll be 50 this year and I feel like I’m only just getting started. I guess it’s time to do all the things.

xo

Engaging patients in research: it’s what we call a no-brainer, right?  Meaning, it’s something so naturally and obviously required it’s not worth putting energy towards justifying it. When anyone questions whether it should be done or not, people roll their eyes, as if to say: are we still talking about this?! Our common understanding is “of course we need to do it, obviously, now let’s figure out how to do it right.”

I must admit: It’s not entirely obvious to me – and if you’ve followed my work over the past couple of years, you’ll perhaps know that I’ve spent quite a bit of energy trying to understand why it’s seen as obvious. This hasn’t been easy.

Part of the challenge is that ‘engagement’ as not a single, simple thing. Rather, it’s a complex and shape-shifting ecosystem of relationships operating within interconnected organizational structures, applied in a myriad of ways.  This ecosystem has emerged in a particular political, historical and social context.

Typically, when we study patient engagement, we zoom in close. We look at interpersonal dynamics, communication, details such as scheduling and compensation. We see frameworks and programs and quality improvement. And we focus on things we can measure, like outcomes and impact. When we do this, when we zoom in close, we see people working together, often in satisfying ways, collaborating and solving problems.

It’s no wonder this is what we focus on: collaboration is deeply satisfying. So is recognition, validation, inclusion.  I’ve made the mistake of undervaluing how important these things are – they’re the essence of human experience and connection.  And because these feelings are so powerful, they fuel the passion for patient engagement in research.

Engagement has something for everyone. It’s an outlet for volunteerism. It’s an expression of values. For some, it’s a stance against the cold and impersonal biomedical or technocratic model of health research. For researchers too – those who embrace it may feel they are allies in an important movement, one that humanizes medicine and feels professionally and personally fulfilling.

Patient engagement feels like a force of disruption and patient empowerment. At an individual and interpersonal level, this has resonance and is gratifying. It feels true.

My task today is not to invalidate this perspective, but rather to say: okay, and what else might be happening?  If we widen our scope, we can hold more of the phenomenon of patient engagement in view in such a way that we can turn it over, look underneath, perceive it from different sides. When we do this, we have an opportunity to see a multitude of factors at play, some of which are hidden or invisible to those who are embedded in it. We may also see unintended consequences, and broader agendas potentially being served.

That’s what I’d like to do today: zoom out.

Let’s start with some common ground, things we probably agree on:

When we talk about engaging patients in research, we mean patients involved in the research process as partners, whether in literal contractual terms or as an idealized form of collaboration.

(I understand that not everyone likes the term ‘patient partner’ but I’ll be using it today as a shorthand to describe patients in roles other than as subject or participant. I will also use the term ‘patient leader’ to describe patient partners who are involved in the development of patient engagement approaches and programs.)

Ideally, patient partners work with researchers to co-produce research – their insights and contributions are (ideally) seen as having equal value to the knowledge and skills of the researchers.  Patient partners and researchers may have different roles and may be involved at different stages – typically, patient partners are not functioning as scientists – more commonly they are involved in the planning, management and administration of the research project. Regardless of the tasks, in an ideal model of patient partnership, the work and contribution of patients and researchers have equal status, and recognition of the work is shared.

We may also agree that patient engagement in research is a disruption of the traditional model of health research. It comprises a significant change of role for both patients and researchers, and it’s a lot for researchers (in particular) to get their heads around. Whether it’s a welcome change or not, it’s certainly a paradigm shift. And with that comes growing pains, things to sort out.

We all know what those things are:

• Compensation or remuneration
• Authorship
• Representativeness
• Roles and definitions
• Patient preferences, in terms of how they want to engage
• to name a few

Questions of responsibility, authority, roles – all of this naturally needs to be negotiated. These terms of engagement are important, because they reflect whether and how work is valued. Few would want to dedicate time to a project for which there won’t be some kind of return – whether it’s monetary, in the form of appreciation, or in the satisfaction of making a difference.

These kinds of topics overwhelmingly occupy the current canon of literature about patient engagement in research. Maybe that makes sense: if, generally, the feeling is that we’re beyond the more basic questions of why and what for, then these administrative questions of how come in to sharper relief, and allow people to focus on improvement.

Now here’s where I may be leaving our common ground and heading down a different path:  I don’t think focusing on tactics is enough. And in fact, this close-up study of the administration of patient engagement keeps us so busy we often fail to see some of the broader issues. So zooming out, broadening our scope, may be a useful (if uncomfortable) exercise.

Last year, around this time, I delivered a keynote address at the Cochrane Colloquium in Edinburgh Scotland. (In fact, it was that very talk that landed me an invitation to speak here today!)

I delivered what can best be described as a manifesto, and outlined several aspects of patient engagement that I think are hard to see when immersed in the tasks of engaging.

In that talk, I wondered if engaging patients is essentially virtue-signalling – making institutions look good while keeping patients busy with essentially unimpactful or inconsequential busywork. I proposed that engaging patients as partners is fundamentally changing what research is, impacting and changing in unpredictable ways the very methodology and protocols that distinguish research from opinion. I thought about the vulnerability of patients and lack of good facilitation in potentially sensitive or triggering settings; I questioned why there was no requirement for reflexivity or analysis concerning engagement encounters; and I pondered the simplistic, uncritical “happy path” that research about engagement takes, with its focus on process, improvement, and personal satisfaction.

It was an intentionally provocative talk and one that indeed ruffled a few feathers. In the end, I implored researchers to protest the imposition of patient engagement when it simply doesn’t make any sense. I invited patients to reconsider whether it was worth their time. A rich discussion ensued – in person, via email, and at subsequent events. I had unintentionally made myself a lightning rod and I got to hear first hand some of the sentiments my talk provoked.

Here’s what I learned from researchers:

Many were flummoxed by the increasing pressure to include patients in research projects, and felt they had no one with whom to discuss their discomforts lest they be seen as difficult, or worse: inflexible or old-fashioned. They felt it was a disruptive requirement that was not simple to meet, nor did it come with sufficient explanation or justification. They didn’t know how to engage patients in ways that would be satisfying for patients and also support project momentum – which is made more frustrating by not fully knowing why.

Evidence base in the literature has never been strong, and it was unclear to some what problem ‘patient engagement’ was solving. So understandably, some researchers felt uneasy about injecting untrained human catalysts into a well-established protocol, in what they saw as an experimental fashion.

This creates an interesting tension because the ‘no-brainer’ sentiment was never about evidence. Rather, I think what we mean by ‘of course we need to include patients’ is that there is a case to be made for a moral imperative. Patients, this argument goes, should have a voice not only with respect to research priorities, but also research process. Using language borrowed from disability rights activism, the refrain ‘nothing about us without us’ is a compelling justification.

It’s a sentiment that has emotional resonance – many researchers I spoke to do indeed feel it makes sense to involve patients who have a meaningful connection to a particular research topic. But then: why partners? What exactly is this leap from helpful participant or informant or interlocutor, to ‘partner’? Some researchers feel they were already listening to patients, already learning from their clinical experience, already conferring with patients about their priorities, interests, and preferences. For those who engage in community participatory action research, there’s a clear understanding of what issues are being addressed, and for whose benefit the research is being done. In the context of patient-oriented research programs, what is this partnership thing, and what does it accomplish in the interest of research?

I also heard from researchers who saw patient engagement as an exciting opportunity – they not only saw material value in patient input and support at various phases of the project, but they welcomed the opportunity for personal connection with patients, and appreciated the insight and experience of their patient partners. They felt there was much they could learn and the partner model seemed a good next step.

The response to my talk from patients was a bit more one-sided.

I actually didn’t hear much from those who disagreed with me – at least not directly!  My interpretation of this is that engaged patients by and large are passionate, dedicated, focused on growth and improvement –my message just isn’t useful when there’s so much work to do and more ground to cover. Fair enough.

I did hear from one particular patient partner who told me he resented the implication that patients had been hoodwinked somehow, or that they were being taken advantage of. And I understand that – many patients are indeed firmly in the driver’s seat of their own engagement experiences and are understandably protective of their work. Direct comments to me like this were rare, although I suspect the sentiments are not.

So likely due to the nature of self-selection, I heard mostly from patients who felt that my talk had given voice to their own misgivings. They had indeed experienced poorly facilitated projects, unprofessional communication, what they described as bullying from fellow patients. Some had questions about the value and appreciation of their work, expressing frustration at tokenism and feeling utilized primarily for their status as a patient and not for their unique insights, sensing they were interchangeable and expendable. Interestingly, the ages-old concern of engaging patients just to ‘check a box’ seems to be increasing, now that engagement is becoming more broadly mandated in order for projects to access funding and publication (whether a requirement is stated explicitly or not). While this check-box was surely put in place with good intentions, perhaps an unintended consequence is that it breeds suspicion.

I came away from these discussions appreciating the varied feelings and impressions of both patient partners and researchers.  

I also noted a distinct common thread throughout all of these conversations: it was that despite their complaints, patients and researchers remain committed, and have a very high tolerance for flux, figuring things out as they go. There was an embrace of imperfection, and in some cases an explicit rejection of what’s considered a traditional, scientific, biomedical model of established research methodology. There was a relish in shaking things up.

I felt I was hearing an origin story being delivered in real time. What I heard over and over again is that patient engagement is still new. It’s finding its legs. We have to give it time. We’re still working it out. We need to keep iterating, or refining.  Perhaps this why some people find what I say kind of irritating – it’s too soon to poke holes because it’s not ready yet.

I sensed a belief in engagement as a cause – a belief that health research has a moral imperative to include patients. It’s old fashioned to believe otherwise, and it’s up to all involved to keep working on improvement.

And indeed, people are dedicated to toiling at this issue. Researchers are increasingly accepting of the fact that they need to get on board. Even in these short months since Edinburgh those mixed feelings are shifting to acceptance, a willingness to get on with things, and an acknowledgement that patient engagement is obviously here to stay.

This, in turn, seems to have heartened patients. Patients are organizing, developing communities of practice. There are calls not only for improvement but for expansion – to be included in all aspects of a project, at all levels of government and institutions.  Patient leaders demand to attend even the most technical of professional or business meetings. Networks of patient-partners are producing their own frameworks, they are publishing guidelines about compensation, attribution, and other terms of engagement. Individual patients are signing up for training and certification, and supporting each other to become more effective at the work. In social media there’s a growing call-out culture, with patients chastising conference organizers for not being ‘Patients Included.’ It’s impressive, the amount of dedication and work.

I’m currently on my second paid consulting project with the Ontario SPOR Support Unit, and I can honestly say that I have never worked with a group of people who are so thoroughly invested in their work, who listen actively in every conversation and who are keen to keep dialogue moving forward. Sure, there are tensions and disagreements and some typical group dynamics, but that’s to be expected. I’ve worked quite a bit with both business and healthcare groups in my own consulting practice, and I have never seen corporate or hospital employees so engaged and curious in their meetings and activities.

The passion of patient partners has ratcheted up to such an extent that my calls last year to stop, or slow things down, now seem naïve and endearingly quaint.

—

Patient engagement in all areas of healthcare is a real juggernaut, building momentum and developing at a rapid pace.

To keep up, healthcare organizations develop programs and policies, hire engagement professionals, and figure out how to systemically include patients as part of their quality and improvement practices. To do this, it seems that healthcare organizations are borrowing from the business world’s playbook of co-design, collaboration, and innovation approaches.

As our universal healthcare system edges towards becoming a two-tiered or multi-tiered system, subject to market forces and erosion through privatization, it makes sense that a consumer logic takes over, that we draw on ideas from business, and that patients want a direct say in how things are done.

Patients have inserted themselves into the running of our public institutions because in many cases their trust in experts is diminished. Now of course this isn’t the only thing that’s true: many patients engage specifically in research because of their intellectual curiosity, because they want to volunteer or give back. Perhaps they want to find a community of peers, and contribute to something important to themselves.

But in reality, all of this could be done on an individual basis – I know researchers and patients alike who have been collaborating and learning from each other for decades, long before the term ‘patient engagement’ was coined. But I sense there’s something bigger going on.

When patient partners, and especially patient leaders, push for ‘partnership’, this suggests to me that they feel their healthcare interests are not being properly addressed by elected politicians, bureaucrats, administrators, or medical experts. The solution, it seems, is for individual patient experience and insight to be counted as expertise on par with those who have undergone professional or academic training. The notion of ‘partnership’ appeals to a sense of equality.

Using the language of activists, patient leaders talk of disruption, taking a rightful seat at the table. Invoking ‘patient’ as though it’s an oppressed identity. I sense, in other words, a movement of sorts, aiming to upend established practice in health research.

And now: now that we see organizations actively collaborating or partnering with patients on a systemic level, and funding bodies requiring patients be involved in the research process – it gives the impression that there’s a groundswell of patient-led momentum that is working. For the patient engagement movement, this feels like a win. There’s a sense of storming the gates, of ensuring the out of touch establishment begins to take into account the will of the people. Am I overstating things?  I don’t think so: I hear time and again – from patient partners – that scientists, researchers, and academics are out of touch. In their ivory towers. Not connected with the real-world needs of patients. And they need to learn to give up some control.

I realize this perspective is not shared by all patient partners. As we look through this wider lens, we necessarily must defocus from individual viewpoints and feelings and instead contemplate broader patterns and trends. From this vantage point we might ask: is it a win? Have patients gained something meaningful?

Well, it’s hard to say. Indeed, patients are in spaces they weren’t in before and participating in activities that were previously closed off or didn’t exist. But we don’t know for sure that this is better for all patients. We don’t know for sure that the research process has been improved or by what measure. Thus far, we haven’t needed evidence because it’s seen as a no-brainer.  When we talk about the moral imperative to include patients, saying ‘evidence’ in the same breath can be almost heretical. The demands of patient partners and leaders extend to, and seem to stop at, inclusion. Having a voice, a seat at the table – to augment or counter the traditional biomedical emphasis of health research.  For the patient engagement movement, this seems to be the unifying cause.

—

The full health research enterprise as we commonly understand it, is not limited to only the pure scientific tasks of data collection and analysis. It also includes all the surrounding activities and structures, such as methodology, priority setting, allocation of funding, academic credentials of our scientists and researchers, incorporating human experience through qualitative research – public trust in research is earned because of its well-documented and time-tested approaches.

As a society, we have a common understanding about what it is our assigned experts know, and what they’re doing, and what they are responsible for – which is: the full spectrum of bench to bedside activities, executed with consistency, methodological rigour and integrity, and some cases, reflexivity.

By shoe-horning patients into the health research process in the way we are doing – which is essentially through trial and error, focused on individual experiences, with a quality improvement mindset – we are shifting the core tenets of research from evidence and methodology to the more business and consumerist approaches of collaboration and co-design. This shift will have consequences we can’t fully anticipate.

Patient partners may feel they have accomplished a win – and in some respects, maybe they have. But there are others who are winning, too: politicians who want healthcare operations to be run more like businesses; businesses who want patients to talk and behave more like customers; administrators who want health service delivery to be more efficient and economical, even profitable.

Institutions and governments do well by seizing or creating opportunities to appeal to populism – that is: hooking into sentiments that our ‘so-called experts’ are out of touch. They invite patients in for a chance to collaborate and influence in ways that don’t actually cost them anything in real terms, and use phrases like ‘relevance’ and ‘putting patients first’. Feels emotionally resonant but doesn’t carry substance. It’s the language of business combined with a common sense appeal – paving the way for unknown changes to come.

And what about the ‘experts,’ the scientists and researchers and academics, the ones we feel need to be coached on making their work ‘relevant’? The ones who may be feeling squeezed and criticized? We might reserve some sympathy for them. From their perspective it may seem as though a coalition is forming to redefine and even limit their role – a coalition that’s made up of business-minded institutions, a bevy of engagement professionals, and now, recruited into the cause: passionate patient partners.

—

We patients are the most difficult, unpredictable, and expensive aspect of our healthcare system – we’re a messy bunch – the last thing that those in change want is loud protest or a list of demands. Things go more smoothly when patients are ‘happy customers.’

So perhaps that’s the reason why there is a laissez-faire approach towards the implementation of patient engagement. For bureaucrats and administrators, the details don’t actually matter.  What matters is only that patients have somewhere to bring their energies.

Some patients who become patient partners are already happy customers – they volunteer because they want to express appreciation or gratitude. But just as many, if not more, have stories of wrongdoing, injustice, negligence, structural and interpersonal bias and discrimination. All of these patient experiences, which fuel our passion for making a difference – get channeled into patient engagement. I’m not just talking figuratively: patients with complaints are eventually referred to participate in engagement activities. It’s an effective way to contain and rally patients, get them pulling in the same direction. It doesn’t have to be perfect – the imperfection keeps people busy, working out the kinks. While engagement overall functions as a lubricant.

It’s a perfect vehicle for turning discontent into productive alliance. And as long as it always feels new and evolving and there is tolerance for lack of structure and no specific list of demands from a unified patient voice, no one need be held accountable for how it’s implemented or for what’s delivered. No one need be responsible for tracking incidents of patient harm. No need to determine whether patient engagement is in fact further entrenching bias and privilege rather than remediating it.

—

I’m holding the phenomenon of patient engagement at a certain angle, at a certain distance, in a particular light. When viewed through this frame, we can see it is indeed a disruption to health research but perhaps it’s not exactly a disruption caused by patients. Institutions and government – those in power – recruit patients and foster allegiance. In fact, we are all here today because the federal government, through the provincial support units, arranged it.

This ‘so-called’ disruption is orchestrated from within, by invitation, to shore up support for orienting research towards relevance and efficiency, possibly compromising the integrity of research as we know it.  “Relevance and efficiency” – to me, this doesn’t sound like the language of activists. This sounds like the language of a business-minded government looking to rein in unruly or unpredictable elements.

‘Patient engagement’ channels patient passion and even activism into a productive and supportive institutional program – one in which the enterprise of health research is constrained and made to bend to market forces. The inclusion of patients helps to validate this strategic direction.

—

Perhaps these are, indeed, early days. But I am reluctant to agree with those who say that it’s too soon to be critical. My concern is that, years from now, we may look back and see that ‘patient engagement’ helped to justify a broader shift towards a market-based model of health care and health research, while stifling researcher creativity and independence, impacting people well beyond this community of patient partners.

While we’re here, crafting the origin story. . .  perhaps now is the time to start thinking about what outcome patients actually want.